"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!

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Friday, December 21, 2012

Day 47 fish Oil study

We tried something new today. We had the therapists come to Selah's room instead of her going to the gym or their offices. She did much better. She responded and turned her head with the speech therapist when she touched her face and when she called her name. That is something she has not done here. Then with the cognitive therapist, in 4 out of 4 tests, she responded to the eye test (where her eyes are threatened and she blinks) that is a first also. Around 2:30pm a staff member came an invited us to go to the gym for some Christmas music. I thought she might like to go and sit and listen....boy was I wrong....

First her oxygen levels went down ( we think that at least was a mistake and the machine was hooked incorrectly) I took her back to the room and she started storming...her "witching hour" is 3 pm now 3 days in a row. She only stormed for 15 minutes and then was back in a more normal range but a bit high. the nurse gave her the 4 pm meds and added an extra dose that I probably wouldn't have wanted to give her but boy did she relax, so honestly I was glad she got it.

I finished picking out her wheelchair today....then when we were out tonight doing a little Christmas shopping I got a call about ordering her hospital bed and some other things. That call really got me down. Talk about reality slapping us in the face. I'm not some "name it/claim it" type person or someone who is not realistic but honestly I really did expect her to improve and not need a hospital bed or a wheelchair. I guess when she started making so many strides I thought by the time we got home, she would be close to back to "her normal" But that is not going to happen. I can't even explain how sick I felt when I got that call.....

Today was Sarah's 6th birthday. How ironic that we spent most of today with Selah in the hospital. On Selah's birthday we spent the day with Sam and Sarah in the hospital having eye exams under anesthesia. We did take her out to eat but she wasn't too thrilled with the stew LOL

I'm just heartsick. There is still alot of discussion going on between the doctors/staff here, in NY and our Fish Oil Study doctor. Some tests have been ordered to check for various things. I have so many theories going on in my head of why she is having so many problems but I don't know for sure. Please pray for Selah and for us. This awful setback is so hard for us because we have had only progression for weeks and weeks. That old sick feeling is back in the pit of my stomach. This is harder to deal with since we had seen such change. We used to couldn't wait to get to the hospital every day to see what new thing she was going to do....

I used to pray to get Selah back now I'm just praying to get the Selah of a month ago back!!! I still have some hope that this will resolve, it makes absolutely no sense and I feel it is somehow tied in with her fish oil. I thought they had changed bottles but they haven't I think the doctor wants to get complete clarification of how the fish oil was handed in NY. Maybe this bottle got contaminated....and the fish oil isn't potent anymore.

One mom who uses fish oil on her daughter who has brain damage, stopped it for a few days and her daughter regressed immediately. That is what makes me think something is off with the fish oil bottle..... I really believe the fish oil gave her the progression she had for those 6 weeks. There was no other answer for all she did since she improved rapidly when she started the FO!

My thoughts are all jumbled and I'm a mess tonight.

I know five moms that I'm friends with on FB who have lost their children unexpectedly in the past three months! Four of them did have special needs but their deaths were totally not expected. I also know two moms at the Rochester RMH who lost their children! One child passed away and he wasn't the "sick" child... I know another family that their child is nearing the end of his 5 yr battle with cancer...pray for Vinny. I think of the Connecticut families So much sadness, and heartache this time of year. It's very hard for me to feel very festive this year. But I am thankful for the real meaning of Christmas, our Savior who came to a dark world to give hope and light. I'd be lost, in many ways without Him!

10 comments:

Like you, I'm just grasping at straws but I remember you said that the dosage Selah was getting was a large amount. Are you positive those same large amounts are being given in Jacksonville? You said you don't notice the fishy odor and I just wonder if somehow, someone thought she may be getting too much and cut it back OR maybe she's supposed to get 1.5 ??? and she's getting .15???. I don't know what I'm talking about really but wonder if her dosage is mistakenly cut back.

I didn't realize that the therapists weren't working with Selah in her room. I'm so glad that you tried this! You gave her back her sense of control, and a feeling of safety...and she responded. :-) I'm guessing that the gym is sensory overload for her...too big, maybe echoes when room is not full, brighter lights, extraneous noise. It makes sense to me...confirmed that she doesn't like it for "fun" (music) any more than she likes it for therapy!! It is so much easier to be in control of a very small environment. While every child is different, this reminds me of the child I discussed when we spoke...who initally had a major panic attack (racing heart included) and cried uncontrollably whenever we changed rooms. He eventually learned that it was the people that made him safe, not the room...but it was a long lesson. Please don't give up hope. Let her heal on her own time, and God's time, not on yours. So difficult and painful, I'm sure, but it's just not time to surrender hope. I'm praying even more for you and Jon tonight than I am for Selah, because you are both struggling so mightily. God bless!

I wonder if things maybe are still relating to moving back down to Florida? Different place, different people, even things so small as different temperatures and air pressure may be having an effect on a child whose brain is healing and who can't understand everything that has just happened...

Ditto about how SO much sadness affects the joy of Christmas. Our associate pastor has battled cancer since 2009 & today he's going home on Hospice. He & his wife & family have caused us to repeatedly marvel at God in them that kept them able to fight on in spite of the chemo/radiation treatments & the harsh side-effects. I asked Warren about the scripture John 10:10 where Christ states "I have come that you might have life more abundantly" when in reality most believer's lives on earth don't experience such day to day. He pointed out that life abundant is not defined by our circumstances, but instead is defined by the message of the gospel. Which reminds me of John 1:4,6:14 & 1 John 5:11 & 12. The abundant life is found in our knowing Christ, which is revealed as from glory to glory, 2 Corinthians 3:18.My prayer for you and yours is from Philippians 3:10, "that you may know Christ and the power of His resurrection, and the fellowship of sharing in His sufferings, becoming like Him in His death." Your strength to continually face this harsh battle is utterly dependent on your abiding in His presence.As I stated a long while ago, I pray that whenever God has me go through something as horrifically hard as this has been for you all, that I'll be able to contact you for encouragement to "keep on keepin' on." Rejoicing in Christ alone, Lynn

I agree with Martha. Possibly have someone film every single step of preparing the fish oil and then send the film to the Doctor in charge of the study. That way they can verify that everything is being done correctly. I am praying for a solution and that Selah will start improving again.

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